Tuesday, September 30, 2008

So the Dr. Susan Love website has this odds calculator to figure out your chances of surviving depending on your tumor, treatment,etc. It doesn't combine all the factors like one 'for doctors only' but for my receptor negative tumor, with chemo I have a 63% chance of being alive after 10 years vs 58% of no chemo. So is chemo worth it? There are some assorted other markers that they are just discovering that can more accurately pinpoint ones odds.

Damn-now I wished I had had my mom's cancer, which was receptor positive. Much, much better odds. About 95% without chemo aside from the tam0xifen plus she was 9 years older.

We got a call from Northwest before 6 am saying they were cancelling Shanna's flight due to mechanical difficulties but they had booked her on a 1-stop flight with 30 minutes to spare in Indy. I paid twice as much for the ticket specifically because I wanted to spare her and Oliver the stopover. This is not fair. She later managed to get a later flight that was one stop but we have to pick her up 6 hours later than the original flight plus Ramy has to leave in the middle of the day to get her to the airport instead of dropping her off. But I will get to see them in a few hours barring any more of NW's antics.

Monday, September 29, 2008

I was a bundle of nerves going in today as I knew I would get info that determined how my life will go. My pulse was almost 80 (usually 55). Lots of time spent just waiting and waiting. In all, I was there 5 hours. So the good news was that by palpation and ultrasound, all my nodes look and feel normal-there is a 20% chance that some still could contain cancer. Still right before my surgery, they will inject radioactive dye into the lymph system closest to my tumor and the dye will migrate to the node most likely to have cancer in it. They check this node out cell by cell and if it is clean they won't take all my nodes out and I might maintain the use of my right arm. Dr. D thinks she can schedule my surgery next Tuesday but it has to be cleared by radiology and nuclear medicine first. The other good news is that the tumor is well away from my chest wall and readily resectable. It doesn't have the long tentacles I was afraid it would have so they should get good margins.

The bad news that makes me so disappointed and frightened is that all my nuclear receptor tests were negative. If I was estrogen positive, the cancer could be readily stopped by cutting off its estrogen supply. Having ER positive tumors increases ones survival way over the negative kind. I am not sure the ramifications of being progesterone negative. In the past, being Her2 positive was a death sentence but now Herceptin kills these tumors effectively so I won't have that option either.

So they are going to recommend chemo even though my tumor is small due to its aggressiveness and that sounds like torture.

Taking Prem-pro stimulates estrogen positive tumors to grow and they are usually very easy to deal with. However since my tumor is negative, who knows what caused it. Not prem-pro.

I didn't get to see the social worker as I spent so much time in ultrasound. All of us victims (about 8-hard to tell as some of them had support people with them-I did it alone) saw a video on breast cancer and options, most having to do with mastectomy.Most of the day I have been choking down tears especially after I found out I was estrogen negative. Shanna and Oliver come tomorrow and will distract me from this.

Sunday, September 28, 2008

I am trying to keep busy. I am thinking that if it weren't for this thing, my life would be pretty good but I become sad when I think that I may be leaving it. Fortunately, alot of the time I forget what is happening, which surprises me as when I went through that scare 9 years ago, I was obsessed and it never left my mind. Perhaps this is being too melodramatic as after all, my tumor is small and I don't know yet all the other factors that will affect my survival. I will find some of these things tomorrow but the main ones, I won't find out until after the surgery meaning clean margins and nodal status.

Yesterday I took Naomi out to buy her umpteenth fancy dress for homecoming. She is at least paying for this one. It really is a pain shopping with her as she has specific ideas what she wants and the stores don't have it so she is frustrated. We aimlessly went all over the place for 2 hours until finally settling back to Macy's where we had gone first. But we did find the dress that would look best on her although they didn't have it in her size, so it is tight but she is happy. She needs me way more than most kids her age need their mom and I should be working harder to make her independent. She of course doesn't appreciate me at all though she does realize her dependence. I am trying to make some happy memories for her. Her senior pictures came in and
she is beautiful in them. I went to her IEP meeting Friday and at least she is doing OK in her classes. We discussed her goals about becoming more independent.

One of the 'Moms"called when I returned. I hadn't told the 'moms' yet except one of them and I wasn't even going to tell her .. I feel ashamed of the cancer-sort of like I caused it due to my bad life style choices. Also I carried on so much about that last thing, I think I have exhausted people. Also it is so awkward sometimes dealing with people who are having awlful things happen to them. You don't know what to say so you avoid them. I don't want to be shunned. My broken arm was different. It really messed up my life in the short term but everyone knew I would get better so it was OK. .

My friend made dinner for me. It was a very pretty night outside and she built a bonfire in her firepit. We drank alot of wine, had good talks, and I was able not to be too morbid.

I was supposed to go out to brunch with J today but her car broke down. We might have time for a short walk after i pick her up from the car dealer. Later Josh is having us over for dinner.

Saturday, September 27, 2008

I feel fine physically. Running is becoming easier and easier and I think I am dropping weight. At least my clothes are baggier but I am off those hormones that can make me retain water and also my thyroid meds are gradually kicking in as I was quite hypothyroid a few months ago.After the biopsy I wasn't to do any strenuous exercise for a few days but after 48 hours, I figured I could double bra to minimize bouncing. I don't want them to use a possible hemotoma as an excuse to put off surgery.

UM sent me all this info by UPS. Lots of info including about mastecomy. I don't think I will need that unless they can't get clean margins.

I had something about my negative prognosis to Josh and he got very mad at me saying that I am being unnecessarily negative and that alone will ensure a negative outcome. I guess I'll have to put on a happy face but he is no different from anyone else-no one likes self pity.

Friday, September 26, 2008

I am still very much taken back by the alleged 'aggressive' nature of my tumor. It seems that it makes my survival more remote. I did troubling internet searches with hits saying that cures MAY be still possible despite grade 3... However, Steve bought me the new edition of Susan Love's breast book and said that a grade 3 tumor per se doesn't really affect the long term prognosis that much and the grading scale is very arbitrary. My small tumor size is still my best hope.

She does go into great detail about the epidemiology of breast cancer. I seem to fit the breast cancer patient profile: high bone density, tall, overweight, family history,dense breasts, hormone replacement therapy, and alcohol use. The last two factors are particularly under my control and are the most scary. Presumably a single drink while on HRT can cause the estrogen levels to spike 3x the normal rate. I have never read anything previous to this saying there is an extreme synergistic effect taking HRT while drinking alcohol. But HRT allegedly stimulates lobular carcinomas and mine is ductal. Although not so many studies in the US have been done on so-called bioidentical estrogens for replacement, European studies show the same increase in cancer with them.

I met with A for Happy Hour to get details about his wife's cancer to give me some idea on what I am in for. I'm not sure are situations are that close. Her tumor was about the same size but low grade. It took them 3 months to get their act together enough to remove it. Part of the problem was that there was no single point of accountability. They thought they saw lesions in her other breast and insisted on checking those out also before dealing with her primary tumor. They turned out to be 'nothing' but it delayed her treatment considerably adding to anxiety. Her tumor was close to her chest wall so they could not get 'clean margins' without digging into her chest muscles. Even though her nodes were negative, they thought she needed more than radiation to kill the cells that might be hiding in her chest wall so she was on at least 2 rounds of Adriamycin, which is terribly toxic and beyond feeling shitty, caused her hair to fall out. After she recovered from that, she went for 7 weeks of radiation finishing up a year after the initial diagnosis. It has been a year and she is fine. She got a wig. She didn't care for the support groups as some of the people seem to identify themselves first as a cancer victim and she didn't want that. The chemo seemed like overkill to me for a small, low grade tumor but my breastbook does say it increases your survival.

Wednesday, September 24, 2008

Dr. W, the nice radiologist, called later today with a partial pathology report confirming the cancer. Still to be done is the estrogen receptor status and the HER-2 stuff (human epithelial growth factor). I insisted that he read me the report as he was being very vague and finally reluctantly told me that it was a grade 3 tumor, the worse in terms of aggressiveness. He really does have a problem delivering bad news. I was trying to get from him, did this mean it was growing extra fast but he said it meant the cells were undifferentiated, which probably will mean that they are estrogen negative so they will be harder to stop. As cancer progresses, the cells become less and less like the cells they came from and are much harder to kill. I want this thing out now and stressed the need for surgery ASAP. He said he would do what he could and I soon got another call scheduling me Monday for most of the day. I will spend about 3 hours with my newly diagnosed cohorts learning about cancer and the options, meeting with a social worker and setting up support groups. While this is going on, each of our cancers is discussed before a 'tumor review board' with various experts giving their opinion on what should be done and finally I get to meet with a surgeon who tells me what they came up with. The scheduler told me surgery is usually scheduled between 2 to 4 weeks later. I said since I seem to have an aggressive cancer, this is too long. She said they will take that into account and maybe it will be sooner. I am really trying not to shoot the messenger. I am scheduled to be there 7 hours.

The Wall Street Journal recently had a discussion on whether is it really necessary that physicians know organic chemistry. Shouldn't they take some classes in bedside manner instead. My opinion is that they should know the chemistry and they should know basic cellular biology. Bedside manner would be nice too though I don't think it could be taught. I started questioning my nice radiologist about how many of my cancer cells were in "S" phase (an indication of how fast they are growing) and he hemmed and hawed saying 'gee that is an excellent question, I'd love to sit in during your consult, you seem to know so much.'

So things seem bleaker than before. Maybe I should have the whole thing cut off. But I am trying to distance myself from the reality. THIS CAN NOT BE HAPPENING TO ME. I really haven't grasped it. It is a problem and annoying and part of me wished I didn't open this door to look in but it would have only gotten worse. I cancelled my colonoscopy. Enough stuff already.

Right after the UM calls, my long time friend J called. We went raspberry picking, which I haven't done in a while. The owner is a nice 81 year old man making jokes about his age. It struck me that I won't probably be that old. Lots of raspberries this year.

Tomorrow I go to Happy Hour with a former co-worker. His wife went through all this 2 years ago. I need details, what to expect, etc. I think she had a more scary diagnosis than me plus she had to work throughout it and my friend had been let go byour former employer on top of it all. She has e-mailed me some saying the worse part was what I am doing now-waiting for biopsies and more information. She did radiation for 7 weeks but got to know the guys going in for prostrate treatments at the same time. I want light at the end of the tunnel. The nice radiologist still insists I have a good prognosis but talk is cheap and he really has a hard time giving bad news. He identified with me too much having kids the same age and being the same age.

It's been two weeks since I found out about my suspicious lump from a routine mammogram. About nine years ago, a small lesion was found that the radiologist then thought was very early breast cancer ('you are lucky we caught it so early'). My Mom had cancer when she was 64. Her tumor was 2-2.5 cm. At that time, it was the size that they thought it could have spread. She had me choose a treatment plan for her as it was too confusing for her. So we had the lump removed, followed by radiation for 6 weeks and tamoxifen for 5 years. She died 16 years later of Alzheimer's but seemed to have no recurrence of the cancer. So I am hoping that my smaller (1.6 cm at the largest dimension) tumor will be estrogen positive, thus more treatable. Since I used the wrong health care system for my insurance at the time and the holidays, it was a very long 2 months to wait for my biopsy. I could not think of anything else at the time other than my possible, painful death and how unfair it was. I was still pre-menopausal and I thought the cancer would be less treatable. But when I went to the surgeon, they took more films and told me that the lesion had been there for at least 5 years previously and it wasn't worth biopsying. They would just watch-every 3 months, then every 6 months, then every year with no changes. I skipped my annual mammogram this May as I wanted no bad news before I went to Italy so it had been 16 months when I showed up 2 weeks ago. They kept repeating the scans in my right (bad) breast and then having me wait. I was there almost 3.5 hours. Finally I saw a radiologist who showed me the tumor by ultrasound. It looked like a grape. She was very cold and unhelpful. Suddenly I had to make a decision on what to do next, whether to go for a biopsy or to have the whole thing removed. Before I could decide this, I wanted to know my chances of this being benign. She refused to give me any odds or any information or any hope.She said she couldn't influence my decision one way or the other but wouldn't give me the info I needed to make a decision. She actually had an intern she was training there with her-teaching her really shitty bedside manner. I scheduled a biopsy for 13 days later. It seemed like a very long time to wait and meanwhile this thing is growing. I did say I would stop feeding it "Prem-Pro" and she said that would be a good idea.

I am so mad at myself about the Prem-Pro as most likely this tumor is estrogen positive. I hit menopause at the same time that the Women's Collective health project suddenly advised everyone to stop taking Prem-Pro immediately as there was a sharp increase in breast cancer and heart attacks with those taking it so I just dealt with the hot flashes and all the other nasty symptoms. Two years later, another study showed that the sharp increase in adverse effects was confined to the older than 60 group and that for the younger (group 50-60) hardly no negative effects and actually improved cardiovascular health and bone density were observed. I immediately got a prescription which I've been taking for 4 years and alot of my symptoms improved. I have to look up that study and make sure it wasn't sponsored by Wyeth. It has been pointed out to me that Prem-Pro didn't cause the cancer as it started years ago but I feel it definitely fed it.

When I got home from the mammogram, I immediately started my research. 80 to 90% of growths turn out to be benign. Why couldn't that bitch tell me that? I did realize that my odds were probably not as good as that but still it felt that there was a very good chance I didn't have cancer so why worry so much. I had wasted so much of my life 9 years ago fretting about my bad luck for nothing. Certainly I should have learned a lesson. So many of the things I have kept myself up at night with have disappeared. But I very well could have cancer and it is scary. Another issue was where to have it treated. If I do have cancer, they would probably take the lump out followed by radiation. Every day for 6 weeks. But there is a new procedure-Mammosite-that implants radiation for only 5 days with similar results. They don't do it at UM but someone at St. Joe's does it. So maybe I should go to St. Joe's. I have since read that Mammosite cherry picks its patients-small tumors, clean margins and no nodes-and that even without treatment, similar results would be obtained. Also, unlike what the site leads me to believe, you have to go in 2x a day for those 5 days and inserting the radiation seeds isn't easy.

So yesterday was the biopsy. I read about this in advance and read everything from didn't feel a thing and most excruciating pain ever. I was very nervous and trembled. I had to wait 45 minutes before seeing anyone. My fellow patients weren't chatty as the ones 2 weeks ago were. Then the topic was on one mother's concern about the evacuation of her adult daughter from coastal Texas from Hurricane Ike. Her daughter was using this as an opportunity to extract more money from her mom. Another women was upset that they told her she'd have to come back in 3 months.
A nurse, Carolyn (?-I forget names so fast) was very compassionate and held my hand most of the time giving me Kleenexes even when I didn't need them and hugging me every time negative stuff came up. She explained the procedure and showed me the little titanium triangle they would insert in my tumor to show others that it was the tumor biopsied. But in 2 weeks, that will probably be gone. The same tech who did my mammogram was there and 2 radiologists-both nice. One was a man my age who did the procedure. The woman mainly gave him advice on what to sample. But what they told me was very bad. It very much appeared to both of them that I have cancer because my lesion is so irregularly shaped. I am annoyed that the bitch 2 weeks ago didn't share that with me but I guess I got 2 weeks of hope that maybe I didn't have cancer. The tumor is less than an inch from my skin so I am thinking it is not the original lesion near my chest wall. Hopefully this will make it easier to remove. I still couldn't feel it-at best some diffuse thickening. I would not have discovered this on my own. The good news is that it is relatively small so it probably hasn't spread. It should be readily treatable and I should live through this.
I lay on my side with my right arm over my ear causing my glasses to dig into my arm. I had them removed but later asked for them back so I could see what they were talking about. The most painful part was them sticking needles in my breast to numb it. It was more creepy than painful. The noise to remove tissue samples was similar to a paper punch. They made the sound a few times so I wouldn't startle. They took 5 samples from various parts of the tumor. They looked like slightly bloody strings of vermicelli .5 cm long. The longest part of the procedure was putting in the marker. Afterwards I was told they would call me Thursday with the results. I said what would happen if they were benign. They said that was unlikely but they would consider it a false negative as my clinical symptoms are so consistent with cancer. Still he had a patient that happened to. He said how difficult it is to tell someone on the phone they have cancer so he is preparing me now. After another mammogram, I was packed with ice and told to come back in 45 minutes to make sure I wasn't bleeding. I had coffee with Steve shell shocked that I had cancer. Steve tried to be as helpful as he could. I am shell shocked and get by by not really thinking that this is happening.

The wound is healing. I'm not supposed to run, which is annoying as I just started to lose weight and get much better at running. I will go tomorrow anyways. I was allowed to take Tylenol for the pain which never has helped. I took half tablets of Viocodin which took care of everything. A day later, it is only slightly sore. The nurse is supposed to call today to see how I am and the pathology comes in tomorrow. I forgot to ask if its intraductal or intralobal.

Steve was nice and waited on me hand and foot. Shanna called and I told her the bad news. She'll be here Tuesday. Naomi however, could not find it in herself to be any nicer than usual and actually was quite bitchy. I was so sad that she couldn't find it in herself to be nice to me when I could be dying. This resulted in a huge fight with her stomping out of the house with Josh trying to moderate it by phone. Eventually I had to pick her up. She said that she doesn't like it when I feel sorry for myself and doesn't need anymore stress. She said of course she loves me and what do I think will happen if I'm not around and she has to deal with Dad? I said that even if this does kill me, it will take a while and I am just very afraid of the pain I'll have and the constant uncertainty that this thing will come back and spread.

So I think absurd thoughts-the worst one is that I will kill myself before cancer will. At this point, that is very stupid though if it gets to the point that it spreads to my bones....
But the odds allegedly are with me. The nurse called as I wrote this and said the pathology report might be done today.

Steve and me

40th anniversary trip to Spain

About me

I am a mother of 3, wife of 1, and grandmother of 6. For years, I had been a medicinal chemist. Not long after I was retired early, I found myself with triple negative breast cancer. My struggles with it are in this blog along with the joys and trials of being a mother and grandmother. I love to be physically active, travel, read, and garden. Although my degrees are in chemistry and cellular biology not medicine, I keep up with the medical literature and report herein watching closely for good news against this deadly disease. As time goes on, my stay in Cancerland has become more a bad memory than a reality. This blog has since morphed into a photo blog in which I try to capture moments of beauty in my life.